Living with adhesions??Has anyone refused... - Endometriosis UK

Endometriosis UK

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Living with adhesions??Has anyone refused surgery to remove them??and if so, what happens if you just leave them??

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jenp657
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hillidoos profile image
hillidoos

i wish i had but i spent two hours in theatre having my womb stripped and my tubes and ovaries released from the side of womb, i have stage 4 endo and didn't have any symptons before surgery but since have ended up on morphine and now have zoladex implant every month and liviel, they have stopped the pain but i do wonder if i would have been better off without the surgery. Only good thing to come out of it is that it highlighted adhesions in my colon which were causing obstructions hence the implants etc.

If you aren't suffering at the moment i would leave well alone. good luck

jenp657 profile image
jenp657

Thanks for responding!Your story sounds similar to mine.Diagnosed with endo whilst having a lap to remove a cyst(there wasn't a cyst,it was my ovary that was enlarged),dense adhesions everywhere and everything stuck together.I've just had my 5th zoladex implant and I return to see my surgeon in may to discuss further surgery......the zoladex doesn't seem to be helping with the pain but I'm still in two minds whether to have more surgery or not!I wish they could tell me for definite if it'll work or not!!My surgeon said that surgery could cause more adhesions!!At least the zoladex has had an impact on my ovary which has now returned to normal size!!she was going to remove the ovary but now I think she'll leave it in xxx

Chrissie66 profile image
Chrissie66

Hi Jen - my gut instinct, like hillidoos, would be to leave well alone.

I always cringe when I read of ladies who are demanding more laparoscopies for pain relief - your surgeon is absolutely right, every time you have any sort of invasive procedure, more scar tissue is created. Endo THRIVES on scar tissue, so an operation which might give a few months of temporary relief will eventually end up making things much worse.

If you're not trying for a baby at this stage and they can find a way of controlling the pain I personally would stay well away from any surgery unless of course the situation becomes critical or life threatening.

There is no cure for endometriosis. It's horrible, but it is what it is. As your ovary experience has proved, it can be controlled to some extent by Zoladex but that's really as much as anybody can do, manage it, and the accompanying pain.

Just a hint - ask your doctor if you can switch from Zoladex to Prostap. They're supposed to be the same drug, but in my early endo days, I found that Prostap worked much better for me than Zoladex. Nowadays I can't tolerate Prostap which just goes to show that our bodies change over time and it's a case of finding what's right for you at the moment.

Good luck, I hope you start to feel better soon xxx

jenp657 profile image
jenp657

Thanks for replying Chrissie66.It's good to hear from someone elses perspective.I think when I next see my surgeon I will discuss all my concerns and see what she says.My main concern for NOT having the surgery is living with the pain.I'm already on Paracetemol,Naproxen,Tramadol and Oramorph and feel like a zombie most of the time!!I'm a single mum to a young boy and I feel that he is missing out on having a "normal"mum.I will soon be expected to look for work as my son is nearly 5 and I really have no idea how I could work with all this pain/dependency on painkillers.

Can you have the Prostap long-term?I know they don't usually allow you to have zoladex for more than 6 months.xxx

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